Abstract

Background: The Resilience Against Depression Disparities (RADD), a community partnered, randomized comparative effectiveness study, aimed to address mental health in Lesbian, Gay, Bisexual, Transgender, and Queer/Questioning (LGBTQ) racial/ethnic populations in New Orleans and Los Angeles.

Objectives: To describe engagement methods, lessons learned, and recommendations in engaging LGBTQ individuals and agencies throughout the RADD study.

Methods: RADD used a community partnered participatory research framework to engage LGBTQ community members and agencies. Observational and quantitative data were collected to describe engagement activities and study adaptations from October 2016 to May 2019.

Results: Our partnered approach resulted in multiple study adaptations. The principles of cultural humility, coleadership, and addressing health determinants were important to successful engagement with LGBTQ community members and study participants. We recommend maintaining cultural humility as the tenant of all research activities.

Conclusions: This project's engagement plan demonstrates that community-academic partnerships can be forged to create and modify existing study models for LGBTQ communities.

Keywords

Community Partnered Participatory Research, Engagement, Health Disparities, Mental Health, Depression, Anxiety

Mental health disparities among LGBTQ people are the result of stigma, prejudice, and discrimination, as described in the minority stress model.1 Compared with the general population, Lesbian, Gay, and Bisexual people are twice as likely to attempt suicide and one and a half times more likely to suffer from anxiety and depression,24 while transgender adults have a nine times greater lifetime risk for suicide attempts.5 LGBTQ individuals from racial or ethnic minority groups may face additional challenges, owing to the intersections of discrimination from race/ethnicity and sexual/gender minority status.6,7 For example, LGBTQ African Americans experience higher [End Page 65] lifetime discrimination with diminished health-related quality of life than LGBTQ non-Hispanic, White adults.8

Participatory research is a recommended strategy to enhance trust with communities that have been historically mistreated by biomedical researchers and healthcare.912 Recent publications have documented how participatory research approaches may be helpful in conducting research with LGBTQ communities.1315 In our current project, we use a community-partnered participatory research (CPPR)16,17 model, a local variant of community-based participatory research.1820 Like community-based participatory research, CPPR is a structured manualized approach that emphasizes authentic community-academic partnerships in all clinical research phases, from study design through results dissemination.16,17,2022

THE RADD STUDY

The RADD study is being conducted by academic and community partners in Los Angeles (LA) and New Orleans (NOLA), Louisiana between October 2016 and March 2021 (Clinicaltrials.gov NCT02986126).23,24 The RADD study team at both sites have collaborated on mental health disparities research for nearly 15 years in contexts such as post-Katrina NOLA and South LA.2531

The RADD study tested the comparative effectiveness of two LGBTQ-tailored depression interventions on depression outcomes and mental health-related quality of life.16,24,28,3134 The study protocol and design have been described in detail elsewhere.24 Participants were approached and screened from agencies known to serve LGBTQ adults, such as health clinics, social-services agencies, and faith-based organizations. Participants included in the study were English or Spanishspeaking, 18 years or older, and scored 10 or more on the 8-item Patient Health Questionnaire (probable depression). All agencies from which participants were recruited were offered depression quality improvement training (Resources for Services [RS]). Participants were then randomized by sex assigned at birth to: 1) RS only; or 2) RS plus a seven-session cognitive behavioral therapy-informed Resiliency Class (RC) delivered by community health workers.25 RADD's goal was to address disparities in depression among LGBTQ people using a community-partnered approach that builds on the LGBTQ community's rich history of self-organizing to combat institutionalized discrimination in health and social policies.3539

The number of partnered research studies about LGBTQ health disparities has grown substantially within the last 5 years.1315,4042 Although several studies have published reports of their engagement processes and lessons learned for specific groups within the larger LGBTQ community,1315,40 none describe engagement efforts of projects that simultaneously aim to address the broader LGBTQ community and groups with important intersections of identity (i.e., race, ethnicity, age, etc.).

OBJECTIVES

Our manuscript's goals are: a) to describe the RADD study's engagement process; b) to summarize lessons learned from our partnerships' adaptations of the funded study; and c) to provide recommendations for future biomedical research studies working with LGBTQ communities.

METHODS

Community and Participant Engagement

Planning

A CPPR structure, principle, and study implementation approach was used to ensure equitable participation by community, academic, and patient partners.16,17 This structure ensures that community engagement principles (e.g., power-sharing, mutual respect, two-way capacity development) are integrated with scientific rigor throughout all aspects of the project.16,17

The RADD study emerged from a previous community-partnered research effort, the Community and Patient Partnered Research Network (CPPRN), which aimed to promote mental health equity and catalyze progress in community-partnered, comparative effectiveness research.28 Study partners emphasized LGBTQ mental health disparities in CPPRN planning conversations. Once a funding opportunity became available, CPPRN team members and additional LGBTQ community stakeholders and experts met in 2015 to plan the proposal for RADD. New Orleans and Los Angeles were selected as study sites because they are both urban areas with large, deep-rooted LGBTQ populations, and had preexisting relationships with community partners.

The Leadership Council (Council) of stakeholders from both Los Angeles County and New Orleans is co-chaired by community and academic investigators. The Council oversees [End Page 66] all study activities, including co-developing and reviewing the study protocol, consent forms, intervention materials, measures, and participant inclusion criteria. Council members include healthcare providers, LGBTQ individuals and their families, LGBTQ-serving agency representatives, and researchers. Meetings take place via video/conference calls and in person. Council members receive financial compensation and opportunities to author manuscripts, and present at local and national conferences.

Implementation

Before beginning participant recruitment, community and academic partners co-led cultural humility trainings for the study team and RC instructors. RC instructors were identified through community partners as trusted members of the local LA and NOLA LGBTQ communities.

Throughout the study planning and implementation processes, the study team and Council members frequently attended local LGBTQ events to build trust and fortify relationships between event participants and organizations and the research team, engage potential agency or organizational partners, and engage potential participants. Such events were hosted by local social service and advocacy groups, bars, support groups, and religious/spiritual venues.

Ongoing Community Engagement

We engaged the broader community throughout the study by hosting multiple community conferences, weekly public meetings in a Community Advisory Board (CAB), and using social media. In October 2016, we hosted a Kickoff Conference to mark the project's beginning and to engage community agencies to participate as project partners. This conference agenda addressed the following topics: the project's funder, the history of using cognitive behavioral therapy in under-resourced communities, RADD study design, the need for community feedback throughout the research process, and opportunities for attendees to give preliminary feedback and join the Council or RS arm of the study.

A pair of community conferences were hosted in Los Angeles and New Orleans in October 2018. At this conference, screener and baseline study results were disseminated to study participants and stakeholders. In addition to presenting RADD study results at community conferences, we presented an overview of sexual and gender minorities and health disparities, hosted panel sessions on LGBTQ mental health, and invited partnering agencies to present an overview of their organizations. Conference attendees provided feedback about the conference through a qualitative evaluation sheet.

We also used social media to ensure consistent transparency between the study team, participants, and communities. A public Facebook page was created where we published RADD toolkits, community resources, and posts on self-care, mental wellness, study events and updates, and local LGBTQ community partnership opportunities.

Engagement Evaluation

Data sources were notes and attendance logs from weekly meetings, community conference evaluations, and interactions with participants during recruitment and intervention implementation between October 2016 and May 2019. Quantitative data such as meeting attendance was abstracted from attendance logs and entered into Microsoft Excel for Mac version 16.16.11 for descriptive analyses. Qualitative data such as meeting notes, open-ended conference evaluation responses, were reviewed by three research staff to develop a summary of engagement activities that tracked partnership adaptations to the original study design.

This study was approved by the University of California, Los Angeles Institutional Review Board with reliance and local reviews from the Louisiana State University Health Sciences Center—New Orleans Office of Research Services and Tulane University School of Medicine.

RESULTS, LESSONS LEARNED, AND RECOMMENDATIONS

Quantitative Findings

A total of 35 people—10 community member attendees and 25 academic attendees—participated in the Council over the course of the project. Several members of the Council identify as members of the LGBTQ community. A summary of engagement activities and attendance by attendee type is in Table 1. The Council met weekly by video/conference calls.

A total of six people in New Orleans, nine people in Los Angeles, and four in remote locations attended the October 2016 Kickoff conference. A total of 98 people attended the October 2018 preliminary dissemination conferences, 40 in Los Angeles and 58 New Orleans. Across both conferences, attendees represented 109 agencies (Table 2) including [End Page 67]

Table 1. Individual attendees of engagement activities, total and community members
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Table 1.

Individual attendees of engagement activities, total and community members

Table 2. Types of agencies represented by attendees at dissemination events
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Table 2.

Types of agencies represented by attendees at dissemination events

faith-based, health services, university, government, public health non-profit, association/advocacy group, and funder. Some participants represented more than one agency. Conference attendee feedback from evaluations confirmed the need for more research to be done around mental health, and for more mental health treatment options for LGBTQ individuals.

LESSONS LEARNED—STUDY ADAPTATIONS

RADD was continually adapted with community partners throughout the study. A key lesson learned was that study framing and approaches required attention to the diversity of the LGBTQ community across race/ethnicity, socioeconomic status, disability, age, religion and spirituality. This was especially useful in adapting staff training materials, the study's recruitment materials, and intervention content to include examples and language specific to LGBTQ people from different racial/ethnic groups from different cities. Partnered study design adaptations are summarized in Table 3.

Staff Training

Trainings were adapted for RADD project staff to include information about LGBTQ health disparities, historical abuses of LGBTQ people within medicine and research, the resulting mistrust of research, medical, and academic establishments, gender theory, language sensitivity, and intersectionality within the LGBTQ community (i.e., LGBTQ culture and perceptions in Black, Latinx, American Indian communities).

Patient and Community Engagement

In NOLA, local Council members requested the creation of a CAB to provide a direct platform for community [End Page 68]

Table 3. Adaptations to Design Based on Community-Academic Partnered Solutions
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Table 3.

Adaptations to Design Based on Community-Academic Partnered Solutions

[End Page 69] perspectives to be shared further. We invited members to participate in the CAB through word-of-mouth, social media, partner organization bulletins or announcements, and networking at local LGBTQ health and social events. Stakeholders continually joined the CAB as project-related networking and communication continued to build throughout the project. CAB meetings created an informal coalition of a diverse group of representatives and stakeholders. CAB members who regularly attended meetings were able to form their own network and establish referral relationships among each other. Even after study activities were completed, CAB members requested quarterly meetings for updates and community partner networking opportunities.

Recruitment Sites

The original plan was to recruit participants from more "traditional" venues such as community clinics, social service agencies, and faith-based organizations. To expand recruitment opportunities and gather a more representative sample, we added non-traditional, community-trusted locations and organizations such as Mardi Gras krewes (social and philanthropic groups), LGBTQ-partner organizations' outreach at Pride month events, LGBTQ-centered social and advocacy groups, local bars, an equine therapy ranch, and a rock climbing gym.

Study Engagement and Intervention Materials

All study engagement, recruitment, and intervention materials were co-developed by community and academic partners. Post-funding, a key question around study framing brought up by LA LGBTQ advocates was whether to frame the study as specifically LGBTQ. Some partners expressed concerns on behalf of their clientele who feared involuntary disclosure of their sexual orientation or gender identity ("being 'outed'") through study participation would put them at risk of exclusion from friends and family members. Similarly, African American male LGTBQ council members noted that some African American males would not self-identify as LGBTQ on standard measures even though they may be attracted to, date, or have sex with other men owing to concerns about being "outed." Others encouraged explicit recognition to foster pride and ownership in a project designed for this community, arguing that veiling the study's purpose reinforced stigma and encouraged internalized homophobia.

Ultimately, the Council chose to explicitly represent the project as LGBTQ-tailored as they believed more people would be inclined to participate in a study specifically designed for them. To avoid "outing" a participant or causing discomfort in unintentional disclosure, the Council decided that for individual contact with participants, especially in emails, phone calls, or reminder text messages, the study name and focus would not be mentioned.

Similarly, co-developing materials for the Resilience Class resulted in incorporating LGBTQ-specific examples throughout the curriculum and acknowledging negative experiences salient to community members that might contribute to depression and anxiety.

LESSONS LEARNED—ENGAGEMENT CHALLENGES

Though the study was designed to be intentionally inter-sectional, engagement with LGBTQ People of Color (PoC) was particularly difficult because there are few LGBTQ PoC-specific organizations in NOLA. While a greater number of LGBTQ PoC-specific organizations exist in Los Angeles, some were unable to partner actively with the study owing to the need to focus on their primary service delivery missions. Because LA is geographically larger than New Orleans, community and academic partners had to rely more on conference calls meetings to provide input on materials and activities. These differences may have contributed to site-specific challenges in community partner and enrolled study participant engagement.

Mistrust in research hindered participation, whether as a Council or CAB member, or a study participant at the agency or client level. Individuals and agencies alike expressed concern about the historical abuses of research within the LGBTQ and racial/ethnic minority communities, as well as concern for the lack of sustainability that often comes with the nature of research projects with limited funding. Repairing and restoring the relationship between this particular community and academic research requires building trust over time, a timeline that one-off research funding through grants and contracts does not support on its own.

Identification and consistent use of culturally preferred and appropriate language around gender, sex, and sexuality descriptors among various subgroups within LGBTQ communities (elders, PoC, etc.) was also challenging. Although we consulted with our Council and CAB on preferred language used in measures and included gender and sexuality [End Page 70] components in staff training, many community members expressed disappointment with or did not identify with the labels chosen by our team.

Additionally, Council and CAB members expressed concern for those randomized to receive only the RS intervention, given the severity of depression disparities and lack of access to care within LGBTQ communities. Further funding was pursued and awarded to offer the RC intervention to those not originally randomized to RS plus RC. A second round of RC classes was offered to New Orleans participants after follow-up data are collected in October 2019.

RECOMMENDATIONS

Based on our lessons learned, we have compiled recommendations for future researchers who conduct mental health research within LGBTQ communities. We use the CPPR principles to frame our recommendations, summarized in Table 4.

Co-Leadership

In our experience, co-leadership with community was critical to understanding community needs, norms, and language across and within study sites. We recommend that at least half of all study team members and leadership consist of community members from the study's target population. To ensure equal partnership, we recommend collaboratively developing a memorandum of understanding or by-laws with all study team members. This document should be completed before beginning study activities and outline resource sharing and allocation, methods of conflict resolution, and guiding principles.

Addressing Health Determinants

Throughout the RADD study, acknowledging the impact of social determinants of health was crucial to building trust. In addressing health determinants, we strongly recommend that study teams, academic members especially, deeply examine local, national, and research-related LGBTQ history to understand the causes of mistrust in research and medicine and to understand the roots and cultural nuances of the LGBTQ community compared to larger society. We strongly recommend intentionally including diverse groups of participants to address magnified disparities resulting from [End Page 71]

Table 4. Recommendations for Conducting Mental Health Research in Partnership with LGBTQ Communities
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Table 4.

Recommendations for Conducting Mental Health Research in Partnership with LGBTQ Communities

intersections of identity, such as race/ethnicity, ability status, socio-economic status, and age.

Resource Sharing

To adhere to the principle of resource sharing, community members who serve as advisors to the study must be compensated for their time and expertise. In addition to financial compensation, community members and research partners should be offered social capital through networking opportunities, both for individuals and for organizations they represent. Further, we recommend preparing a resource list for participants and community members generally who may need additional supports. Resources should include low-cost primary care, mental health, and housing information, at a minimum. These should also be vetted for offering quality, LGBTQ-friendly and specific care. Offering informational resources is also critical in health disparities studies for LGBTQ people as community members already experience greater health or health determinants needs.

Community Self-Empowerment

To promote community self-empowerment, all aspects of the study should highlight and embrace community strengths and assets rather than focusing on disparities only. The LGBTQ community has a long, rich history of community organizing, which should be respected and celebrated. Partnering with community members in these long-established networks will fortify the community's existing infrastructure, increase the study's external validity, and ultimately maximize potential benefit of the study for community members.

Cultural Humility

Our most important recommendation is to position cultural humility at the center of all research activities. We recommend that study teams begin with a tailored LGBTQ sensitivity and cultural humility training that includes a racial/ethnic intersectionality component, introduction to gender theory, and language sensitivity. This training should emphasize that cultural humility is both a discipline and an ongoing exercise of self-evaluation and improvement. However, the training itself should aim to increase knowledge and awareness, while regularly applying the knowledge, seeking new information, and learning through criticism. Self-reflection is the ultimate goal. Further, community partners must be acknowledged as the content experts. Defer to community partners to ensure that language used throughout the study and in study materials is accepted in and understood by the community, especially among racial/ethnic minority communities.

Transparency

Co-leadership and regular engagement activities also played an important role in maintaining transparency between the research team and the community throughout the RADD study. To promote transparency between all parties, we recommend collaborating with partners to identify multiple methods to distribute information to participants regularly. Such methods could include in-person meetings, conferences, a project website, social media sites, and radio appearances.

LIMITATIONS

One of the limitations of this evaluation of the RADD study's engagement process is the type and quantity of data collected. The data collected and analyzed for this evaluation were not collected as part of an intentionally planned part of the original study design. This study was funded using a contracting mechanism rather than a grant, which did not allow funding or time to complete a thorough external process evaluation. We recognize that thorough process evaluations should be done in a participatory research project, but was outside the resources available for this study.

Further, this evaluation could have greatly benefitted from a formal qualitative evaluation of the study by community partners and study participants. Though we collected some long-form qualitative feedback from community conference evaluations, the responses received did not reflect larger themes about the study itself beyond those presented in this paper.

CONCLUSIONS

The experiences outlined in this paper demonstrate that community-academic partnerships can be forged to create and modify existing study models to fit the needs of LGBTQ communities in two different environments. The RADD study team learned numerous lessons in applying unique engagement approaches and making adaptations based on community feedback. Based on these experiences, the team developed recommendations that may guide future LGBTQ-specific studies and programs founded on CPPR principles. These [End Page 72] recommendations may be even more pertinent now than ever before, as both cities in this study as well as many others, have been disproportionately impacted by the concurrent COVID-19 pandemic, natural disasters, and racism—both overt and systemic. As communities cope with these challenges, existing disparities in mental health conditions and access to quality care are likely to be exacerbated, underscoring the urgency of engaging with community members to develop and implement culturally tailored services and execute community-relevant, action-oriented research. By learning from and with our communities, community-academic partnerships can promote community resilience and dismantle institutionalized racism, sexism, and homophobia.

Olivia K. Sugarman
LSU Health Sciences Center—New Orleans, School of Medicine, Department of Internal Medicine
LSU Health Sciences Center—New Orleans, School of Public Health, Department of Behavioral and Community Health Sciences
Ashley Wennerstrom
LSU Health Sciences Center—New Orleans, School of Medicine, Department of Internal Medicine
LSU Health Sciences Center—New Orleans, School of Public Health, Department of Behavioral and Community Health Sciences
Miranda Pollock
LSU Health Sciences Center—New Orleans, School of Medicine, Department of Internal Medicine
Krystal Griffith
Center for Health Services and Society, Semel Institute for Neuroscience and Human Behavior, Department of Psychiatry and Bio-behavioral Sciences, David Geffen School of Medicine at UCLA
Emily Rey
LGBT Community Center of New Orleans
Let's Hatch Media
Sylvanna M. Vargas
Center for Health Services and Society, Semel Institute for Neuroscience and Human Behavior, Department of Psychiatry and Bio-behavioral Sciences, David Geffen School of Medicine at UCLA
University of Southern California, Dornsife College, Department of Psychology, Keck School of Medicine, Department of Preventive Medicine
Catherine Haywood
Louisiana Community Health Outreach Network
Diana Meyers
St. Anna's Episcopal Church
NOLA Partnership for Mental Health
Jessie Smith III
NOLA Partnership for Mental Health
Clarence R. Williams
CW & Company
Pluscedia Williams
Charles R. Drew University of Medicine and Science, Department of Preventative and Social Medicine, College of Medicine
Curley Bonds
Los Angeles County Department of Mental Health
Benjamin Springgate
LSU Health Sciences Center—New Orleans, School of Medicine, Department of Internal Medicine
LSU Health Sciences Center—New Orleans, School of Public Health, Department of Health Policy and Systems Management
Jeanne Miranda
Center for Health Services and Society, Semel Institute for Neuroscience and Human Behavior, Department of Psychiatry and Bio-behavioral Sciences, David Geffen School of Medicine at UCLA
Bowen Chung
Center for Health Services and Society, Semel Institute for Neuroscience and Human Behavior, Department of Psychiatry and Bio-behavioral Sciences, David Geffen School of Medicine at UCLA
Department of Psychiatry, Harbor-UCLA Medical Center/Los Angeles Biomedical Research Institute
RAND Corporation, David Geffen School of Medicine at UCLA
Submitted 22 July 2019, revised 06 November 2020, accepted 29 November 2020

ACKNOWLEDGMENTS

This study could not have been possible without the dedication of community partners, and investment from staff and faculty across institutions. We would like to acknowledge the late Ms. Loretta Jones and her legacy of leadership in community partnered research. We would also like to thank Ms. Felica Jones, Ms. Nancy Alfaro, participants of the New Orleans Community Advisory Board, Drs. Juno Obedin-Maliver and Mitchell Lunn and the PRIDE Study team for their invaluable guidance.

DISCLAIMER

This publication presents a novel perspective of a previously presented study. Portions of this study have been previously presented at conferences and described in prior publications. This study is funded by PCORI contract, "Resiliency Education to Reduce Depression Disparities" (PPRND-1507-32173, PI Chung B). Bowen Chung MD, is a part-time employee of Chorus Innovations Technology, that provided the digital platform for study participant screening and enrollment as well as text messaging about reminders for study activities.

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Additional Information

ISSN
1557-055X
Print ISSN
1557-0541
Pages
65-74
Launched on MUSE
2021-03-23
Open Access
No
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